TOPIC: Medical, Patients & Members, Research
Genetic biobanks, storage facilities for DNA, genetic data and tissue samples, are becoming more prevalent in the rare disease community. The information and samples can be made available to approved researchers for clinical studies, but unlike clinical trials, there is usually no personal benefit or follow-up provided to participants. (more…)
TOPIC: Featured News, Medical, Research, Advocacy
Yesterday’s ruling by the U.S. Supreme Court that human genes are a product of nature and cannot be patented is being hailed by many as a victory for patients and medical research. (more…)
TOPIC: Patients & Members
Summer is right around the corner, which means hot days, grilling, more time outside, and of-course the inevitable rainy-day stuck inside. In preparation for those days, I am trying to compile a list of movies that could make up a “rare disease film festival.” (more…)
TOPIC: Patients & Members
Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases. (more…)
Exomes are big news. Sequencing of the protein-encoding part of the genome is increasingly solving medical mysteries in children. (more…)
